Forum Archives

Return to Forum List

Celiac Anyone? New to This and Having a Pity Party

You are not logged in. Login here or register.

SisterMilkshake posted 1/1/2014 13:26 PM

No more: Coconut Shrimp, Rueben Sandwiches, Biscuits and Gravy, Pizza, Bread, Cake, Donuts, Lasagna, Manicotti, Baked Ziti, Stuffed Shells, Tortellini!

I am so sad, but I will give these things up because I would rather feel well than how I have felt for at least the past decade, if not longer.

For those that suffer from Celiac disease, how hard was it for you to adapt and how do you feel now? Have you been able to find foods that satisfy and recipes that aren't just meat and veggies? I love sauces and gravies!

p.s. I may not be able to get back to this thread right away.

tryingagain74 posted 1/1/2014 13:32 PM

Hi, Sister. I don't have celiac, but I have a child who must avoid wheat, so we frequently eat gluten-free.

I'm not going to rattle off a long list of suggestions. If you'd like, feel free to PM me for anything specific you'd like to discuss. For instance, I can tell you that certain types of gluten-free pasta are far more palatable than others, and if you're looking for an easy, gluten-free breakfast, Van's makes excellent frozen waffles that taste just as good as regular waffles!

Anyway, I know it's overwhelming; I've been juggling multiple dietary restrictions for years, but it's like anything else-- once you get the hang of it, it becomes part of your life, and it's not a big deal anymore.

Glad you got the diagnosis-- from what I've read, you're going to start feeling awesome once you're totally gluten-free!

nowiknow23 posted 1/1/2014 13:43 PM

PM coming, Sister.

nowiknow23 posted 1/1/2014 13:46 PM

ps - I forgot to include this in my post above...


Mommato4 posted 1/1/2014 20:06 PM

We have a Celiac sufferer n the house. Pamela's brand is a really good brand to make cakes, cookies, biscuits, pancakes, etc. We use Ancient grains quinoa for our Mac n cheese and spaghetti. Gluten Free Mama's flour is good too.

There are better choices and more variety out there now.

Jrazz posted 1/1/2014 21:11 PM


What led up to your diagnosis? I'm so sorry you have to deal with this. I hear that they're coming up with better and better alternatives to some of the best foods.

Kelany posted 1/1/2014 21:12 PM

There are many gf recipies out there that are GOOD! I promise. I have a good flour recipe if you want.

circe posted 1/1/2014 21:30 PM

Yep, because of a few family members with celiac (including children) our entire house is gluten free.

No more: Coconut Shrimp, Rueben Sandwiches, Biscuits and Gravy, Pizza, Bread, Cake, Donuts, Lasagna, Manicotti, Baked Ziti, Stuffed Shells, Tortellini!

Aww, you can still have all of those things - it'll just cost a little more to source the different types of pasta and flours for them!

First off, Pamela's baking and pancake mix is a life saver! Pancakes, breads, breading on chicken, you name it. You use it more or less like regular flour or regular pancake mix. It's awesome. And you can get it in bulk on Amazon.

"My spice sage" (website/store) is a great source of coconut flour, almond flour, hazelnut flour and other stuff you might want to make pie crusts, desserts and breading out of.

There are a lot of totally commercial, normal, inexpensive bbq sauces, salsas, pasta sauces and so forth that are gluten free. Sweet Baby Rays and Newmans and stuff. Just on the regular shelves and not in the $$pecialty section! They have really easy smartphone apps where you can scan the barcode while you're shopping and it tells you if the product is gluten free! Can you tell how excited I am at how things have advanced in the celiac survival world!

Also there are tons of restaurants with entire gluten free menus. PF Changs and Outback were some of the first to have entire edible menus, but there are even GF pizzas in the neighborhood pizza joints now. They make sure they use a completely different food prep area so there's no cross contamination.

I don't mind the Betty Crocker gluten free cookies, cakes and brownies at all - I think they taste as good as any other box mix, whatever that's worth. And there's a brand called Namaste that makes great cake mixes. Most frostings are GF!

The only thing that still has a long way to go, IMO, as far as being edible is beer. I think the sorghum beers are icky, but that's just me. And soy sauce. GF soy sauce tastes odd to me.

Yes, you'll probably buy a lot of rock hard, paper thin, dried out loaves of frozen GF bread before giving it up as a lost cause, but then you'll find a brand that tastes great to you and stick with it loyally and forget the bad stuff. Vann's toaster waffles -really the choices are totally decent in the average, run of the mill grocery store these days.

We used to special order everything and pay about 10x as much for groceries, but nowadays we rarely look farther than our grocery store and Amazon for what we need, and it's not as expensive at all to find substitutes!

PM me if you want any more info!

DixieD posted 1/2/2014 10:51 AM

SMS, hubby and I started eating a (vegetarian) Paleo diet which means no gluten but got sidetracked with the holidays and I've been feeling blah and bloated ever since. So we are back on it again.

Google Paleo, there are some interesting ideas that we'd never heard of like using cauliflower as a base for pizza crust. Seriously! And it tasted goooood. We didn't feel deprived.

tushnurse posted 1/2/2014 11:56 AM

While there is absolutely no doubt that Gluten can cause all of us problems, but those with true Celiac really feel the benefits of going Gluten free.

I have to say that you will be surprised at the number of things you can have that are gluten free. Sauces- many BBQ sauces, marinades, and salad dressings are gluten free and can be used instead of gravies. Now the Pasta is a bit trickier, but it is possible.

I strongly suggest that you research what is gluten free before heading to the store, because there is always that gluten free aisle but there are many other foods throughout the store that are gluten free, always have been and always will be. Research before you go, so you don't have to get a loan to pay for your grocieries.

brooke4 posted 1/3/2014 08:34 AM

I'm not celiac, but I often cook for a friend who is. Tushnurse is right - tons of stuff you already have in the kitchen is gluten free (just google any ingredient you're not sure about).

One website that I really like for recipes and ideas is Gluten Free Girl and The Chef. She has some great stuff


cass posted 1/3/2014 09:14 AM

I've been coeliac (U.K. spelling) for almost 20 years and my brother since babyhood. We are both in our 50s. Most of my family members are wheat sensitive or intolerant. I also have dermatitis herpetiformis which is a skin condition caused by ingesting gluten.

Sending you hugs because it takes a wee bit of getting used to in the beginning. That said the diet is a small price to pay for health and I was so very sick for such a long time before being diagnosed. It can be a very debilitating condition before diagnosis but is controlled by diet. I am also a super-sensitive coeliac so cannot tolerate wheat, oats barley or rye.

I'm in U.K. so things are different here but coeliac is on the increase and there is good awareness and lots of GF foods available either commercially or to make at home.

My advice is to read what the experts say, look for a coeliac society on-line and/or locally and arm yourself with as much info as possible about the condition and diet. A breadmaker is also worth considering though I don't have one now as fresh GF bread is available here in supermarkets. You also need to check the ingredients and allergens on every pack.

There is little I don't eat and at Christmas we had turkey, chipolatas, stuffing, gravy, cheesecake and Christmas pudding, all GF.

It takes time and knowledge to follow a GF diet but it will become second nature.

One other thing, people need to know that this is a medical conditiona and not a fad or preference. Gluten, even in very tiny amounts can make coeliacs extrememly ill so if in doubt - cut it out and make sure others know that you can't take ANY risk of ingesting gluten.

A pity pary is ok and necessary initially but then you will want to get on and find out what you can eat and move into research mode. Good luck and pm me if you have further questions.


edited because I added another 10 years onto my life!!

[This message edited by cass at 9:17 AM, January 3rd (Friday)]

ItStillHurts posted 1/5/2014 19:58 PM


Just checking in to see how you are making out. If you have met with a dietician yet?

I wanted to share with you a couple of things I have not seen mentioned here yet: beware the potential for weight gain. (Your body will be absorbing things differently now as it begins to recover from the damage gluten caused); and, beware all the foods that claim to be gluten free may not be so. Many are not made in gluten free facilities and cross contamination is a huge risk. Flour free might me more accurate.

Mama_of_3_Kids posted 1/5/2014 21:39 PM

Gluten Free Cooking is a lot easier than it used to be. The flour and breads are a little pricer, but when gluten causes an allergic reaction, it's worth the cost. We buy GF breads, pastas, flour, etc. and I make much of DD's food in the same way that I do everyone else's. Unfortunately, the entire family going GF isn't possible (due to the cost), but we've all adapted to make sure we keep DD safe.

The one time DD forgot her lunch in a friend's car (and I was at work over an hour away, so I couldn't run it to her), she broke out in hives Since then, she has remembered her lunch. It's a bit of a transition, but if it's truly Celiac, you will feel better by making the change!

SisterMilkshake posted 1/5/2014 23:05 PM

Has anyone told you what a wonderful group of people you are lately? You all are the best for reaching out and sharing with me. SI is the best resource for any subject out there. Really!

Thank you so much for all the wonderful ideas and positive feedback. It really helped me to get out of my pity party.

Jrazz ~ I didn't get the test done.

I also have dermatitis herpetiformis
Yeah, I got this .....on my ass! So embarrassing. My mother has celiac and has been suggesting to me for over a decade that she thought I was, too, with all my mysterious "illnesses". I was hesitant to go along with that, as I really only had a few minor symptoms that I might be celiac and could be explained away by other causes.

Remember my thread about the Target cashier who told me not to be grouchy? When I was actually feeling quite ill. That was the middle of December, the 14th I think. That day forward I started suffering Every. Single. Symptom. Possible. of celiac. Look up the list, I had it. Still didn't put it together. Feeling so nauseous and not being able to eat, but of course, trying to choke down some crackers or dry toast. Yep, give me some more of that poison.

For the past three years I have been very ill on Christmas Day. On Christmas Eve I make my traditional Three (not Four) Cheese Lasagna and enjoy it thoroughly. Makes so much sense now why I was so sick.

Anyhoo, lightbulb moment on Christmas Day. Went gluten free that day forward. Within 4 days I was feeling like a new person. I wasn't extremely fatigued like I always was is the first thing I noticed.

The doctor said I need to go back on gluten to take the test. I won't do it. Not worth the misery. He says I have all the markers of having celiac disease (all my symptoms, the dermatitis herpetiformis, my mother having celiac, my autoimmune illness, etc., etc.) but he can't make a diagnosis for certain without the test.

Really, I am so excited by all the resources and products you have all suggested to me. I can't wait to download that app to my phone, circe. That is so cool!

Unfortunately, I am a horrible baker. I am an awesome cook, but as a baker, I just plain suck. Couldn't even make decent bread in a breadmaker! So, not so sure about baking bread and such. I guess if I get desperate enough, I'll give it a shot.

Thanks again, tryingagain74, nik, mommato4, Jrazz, Sam, circe, DixieD, tush, brooke, cass, ItStillHurts, and Mo3K you are such a thoughtful caring group of people. Thanks for reaching out to me, I appreciate it so much.

P.S. I lost 10#'s in 10 days. I am concerned about the weight gain that cass talked about. It seems like I would lose weight on this GF diet. Also, they say untreated celiac can make losing weight impossible. So, I am confused about that. I really liked losing those 10#'s, that is the one real positive when I was feeling so miserable.

[This message edited by SisterMilkshake at 11:08 PM, January 5th (Sunday)]

kickboxer posted 1/5/2014 23:39 PM

Celiac in da houuuuse!

My 10 year old daughter was diagnosed in 2008 - she has Type 1 Diabetes (the autoimmune destruction of insulin producing cells in the pancreas - diagnosed 3 years before) and 10% of people with T1D will also develop Celiac because they share a gene.

Since there was a 20% chance that another family member would be affected, we chose to have the entire family tested. DING DING --> Winner Winner Chicken Dinner...I was positive.

We both had endoscopic biopsies to confirm our diagnoses. She had a repeat scope 6 months after being GF that showed "no evidence of disease" -- WOOT!

Anyhoo...all that just to say that you aren't alone.

It'll take some time, but you'll find that you're able to enjoy ALL your favorite foods again. You'll figure out how to make the ones you really miss yourself.

I would say it took 6 months for both of us to adapt our taste buds. GF food has some texture differences, and there are subtle flavor differences depending on the combination of flours used.

I use Jules Gluten Free Flour -- I just can't deal with a zillion different bags of flour on my shelf. Jules is already combined and includes Xantham Gum (one more bag of crap I don't need on my shelf). I use it cup for cup with success in *MOST* recipes. I wish I could say everything I've ever made was a success, but I'd be lying. There's a lot of trial and error. That's patient with yourself.

Anyway, feel free to reach out ANYTIME!

And welcome to the GLUTEN-FREE YOU!

SisterMilkshake posted 1/6/2014 04:48 AM

Thanks, kickboxer!

circe posted 1/6/2014 06:59 AM

I lost 10#'s in 10 days. I am concerned about the weight gain that cass talked about. It seems like I would lose weight on this GF diet. Also, they say untreated celiac can make losing weight impossible. So, I am confused about that. I really liked losing those 10#'s, that is the one real positive when I was feeling so miserable.

Weight-wise, it's pretty much the same if you're just substituting out one flour for another, one pasta for another.

You can be tested via endoscopy and by genetic test without eating gluten. The blood test your doc was talking about is looking for antibodies you produce when you're reacting to gluten (that's why you have to be eating it when you're tested) but a lot of people are celiac and don't make the antibodies very well and therefore test false negative - so they always want to follow up with an endoscopy to see if your stomach lining is in good shape anyway.

So if you want, you can get the genetic test and stay gluten free!

DixieD posted 1/6/2014 08:49 AM

For the past three years I have been very ill on Christmas Day. On Christmas Eve I make my traditional Three (not Four) Cheese Lasagna and enjoy it thoroughly.

Love that reference. I'm glad you've not lost your sense of humor!!!

I know what it's like to feel like your body is being poisoned from the inside out. It sucks bigtime! It's good you now know what you are tackling and I hope you will continue to feel better with this lifestyle change.

[This message edited by DixieD at 8:51 AM, January 6th (Monday)]

Return to Forum List

© 2002-2018 ®. All Rights Reserved.